My mother died last week. She spent two weeks in an assisted living facility in Florida and then I brought her home. This is my own story of regret and my open questions about the ethics of the assisted living sales pitch and practices close to the end of life.
My mother found herself in a skilled nursing / rehab facility after a precipitous blood sugar drop landed her in the hospital. In that facility, a doctor started a sales pitch. He suggested to my sister that assisted living would be the best next step, with an emphasis on managing “meds”. Several of us firmly believed she would be best off with one of us (her children) or with a caregiver at home. But the sales pitch persisted with one of my siblings quite won over by the idea. My mother’s particular facility dangled the many activities and services they offer. They oversold the idea that moderate to severe confusion or dementia can be kept at bay easily. When my mother, who had some intermittent confusion, expressed that she did not want to live in such a place, no one seemed to listen. The salespeople continued the hard sell of assisted living. After all, they are salespeople.
While my siblings and I continued to debate ways to avoid assisted living, my sister moved our mother in. Every time I spoke to her before going to Florida to see her, she said, “I never played bingo my whole life, and I do not want to start now.” My sister texted the nurse consistently, wishing to have my mother prodded into participating in the inane stuff to do there.
My mother had spent two weeks there when I arrived. Her face was gaunt, her coloring off, and she was exhausted. The nurses treated us condescendingly, explaining that some residents take a while to adjust to the change of environment. They made it sound like tough love was expected, like we should just leave her and hope her experience would improve. They vigorously advised us not to take her home.
When I got to the facility, the nurse told me that my mother had paranoia and depression. Her rejection of the concerted effort to get her to like the place was the basis for a medical-sounding psychiatric diagnosis of paranoia. I agree with my mother: between the salesperson, the head nurse, my own sister, and the resident ambassador, a pro-assisted living conspiracy is within reason. She felt everyone was against her, and she was correct in that they wanted her to like being there, but she remained opposed.
I knew from the moment I saw her on Monday, my birthday, that she was nearing the end of her life. I observed her having trouble holding down food and drink, having no interest in food, becoming intermittently weak in the heat (I feared her collapse and then she would walk steadily), becoming out of breath easily, obsessing over phone numbers, and withdrawing from everything social, asking desperately to be left alone. Medical professionals should be aware of signs someone is somewhat and then very near death. They seemed oblivious. But oddly, when I asked about a DNR, they had one already filled out with my mother’s name and already signed by the doctor on the hall. That also kind of shocked me – they pulled it out for me to sign a second after my inquiry. It felt insincere.
When I was with her in both May and June, I saw her winding down and noticed her significantly decreased appetite and moderate withdrawal in social settings. It was clear to me then that she was not likely to live for years, but it was apparently not clear to her medical team. There are signs of the end of life.
Walking into my mother’s condominium with her and my daughter, we all had tears of joy. We had freed her and would figure out her care. I would bring her to New York if she were able to travel (although to me it was evident that she would not be) or provide caregivers if she would accept that. My husband was ready to secure the apartment next door to us.
On Friday, she was thrilled that my husband and other children would be arriving to see her. She rallied and got dressed nicely, at home in her own space, but with my help. Friday night, my son and husband helped her off the couch. She suddenly felt she could not get up. She burst out crying to them, “I am going to die now. I am going to die.” They walked her to her bed. We all sat on her bed with her. Hospice care began the next day; the hospice nurse assured us that she was well into the dying process, and it would be just days. The hospice doctors and nurses strongly felt that aggressive care would have been futile. My mother lived from Thursday to Tuesday at home, free.
Recommendations
I have two recommendations to protect people contemplating very late-in-life moves. First, the salespeople (or perhaps some other overseer) should explore whether a person is a candidate for living successfully in an assisted living facility. Anyone can be tossed into a room and told to participate. That is not thriving. An introverted, private person may not be the best candidate. Many people do not want new friends in their very old age. My mother looked youthful and did not see herself as an old lady. She was not a fit among the others. She was already nearing the end and did not want new friends and group meals. They should have seen that. I should have protected her. Second, perhaps the salespeople and medical professionals should recognize signs that one is approaching the end of life. It was not a good time to move to a new place. I blame many professionals for not seeing her as so near the end of life. They overlooked signs I saw in May and June. For the two weeks in assisted living, I blame the aggressive salesperson who oversold the benefits to my sister without proof and without understanding my mother’s fierce independence or her closeness to death. There was also a lack of oversight and safeguards.
It may seem daunting to grow old and die at home. But that should not be. Congregate care is unappealing to many people. When they avoid it until they are quite old, it is even less appealing. My mother chose to live among mixed ages in a regular condominium, not exclusively among the elderly. Yet we faced immense pressure to submit to assisted living. The pressure came from doctors, nurses, and salespeople. Maybe some kind of added safeguard could help people avoid an unhappy move late in old age. For those who value freedom as top priority, the assisted living sales pitch needs a counterbalance. Perhaps a checklist or questionnaire would help a facility learn about a person and genuinely examine the fit. I do not think it is ethical to encourage moving into a facility so close to the end of life. That heightens the need to evaluate the signs that a person is getting close to death. My big takeaway is people want to feel heard. I wish I had been a better listener sooner.
Anne Zimmerman, JD, MS is the Founder and President of Modern Bioethics, Chair of the New York City Bar Association Bioethical Issues Committee, and Editor-in-Chief of Voices in Bioethics.